About our Butterfly Volunteers Scheme
To help combat this upsetting reality, our Charity works alongside NHS hospitals to train Butterfly Volunteers, who sit with end of life patients to provide company and comfort to them in their last days and hours of life. The scheme has been exceptionally well received by staff, patients, and families, with volunteers proudly able to say that, so far, they have collectively brought comfort to over 2,600 patients – with the service continuing to expand.

One volunteer shared her thoughts on why Butterfly Volunteers are so important: “It’s critical because the nursing staff, despite their best efforts, just don’t have the time to sit for hours at the bedside. I can’t imagine anyone dying on their own and how scary that must be, so to even have someone sitting with you holding your hand, it’s invaluable.”

Through our hospital work, we also recognise the importance of supporting soon-to-be bereaved families, leading to the establishment of the ‘Time to Talk’ podcast and running workshop events. These encourage open and honest conversations with loved ones about the end of life, to help people reach a sense of ‘preparedness’ for death and eliminate uncertainties about a person’s final wishes.

The impact of COVID-19
When the COVID-19 pandemic hit, life as we knew it changed entirely. Hospitals employed strict restrictions on hospital visits, meaning that not only were more people experiencing unexpected deaths due to COVID, but more people than ever were dying alone. The pain of losing loved ones in isolation will most certainly end up being a devastating legacy of the pandemic.

Experiencing this personally, we were told of Jess’s* experience of losing her terminally ill husband without support: “My husband died of cancer at the start of the pandemic, and because of the restrictions I wasn’t allowed into any of his appointments and wasn’t able to speak with a single medical professional, even in his last 24 hours of life. The experience completely devastated me.”

Meanwhile, some-100 Butterfly Volunteers felt the frustrations of not being able to support those who were dying and their loved ones, who needed them now more than ever.

The well-trained end of life volunteers felt stuck, unable to use their skills and passion to help those in need. Emma* tells us: “I became frustrated at not being able to support people who needed us. Knowing there was so much pressure being put on the hospital staff, I just wanted to help in any way I could. You can’t just switch off your instincts to want to help and we all felt we were letting down families who couldn’t visit their loved ones in hospital.”

Introducing the Anne Robson Trust National Helpline

As a Charity we knew that we must find a way forward; not allowing the hospital restrictions to stop us from supporting people. To do this, we took to extensively training volunteers to be able to provide remote support with the launch of a new telephone Helpline support service in Spring 2021.

Emma* explains her joy when she found out that she could continue helping those in need through the helpline: “I was over the moon. It is a privilege to be able to continue supporting others during a time that feels very uncertain, when people are still unable to visit their loved ones in hospital due to lockdowns and limiting family visitors”.

The new service has not only allowed volunteers to continue utilising their skills in empathy and compassion, but has also had the effect of reaching a far wider audience across the country than was previously possible with the Butterfly Volunteers alone.

This pandemic-proof solution has meant that for people who are dying, and their loved ones, warm and empathic support is immediately accessible from the comfort of their own home.

The Helpline is a space to talk about any painful and difficult emotions that accompany the end of life, helping people feel less overwhelmed and afraid. As the pandemic continues to separate people from their loved ones, we are making sure that no-one needs to face the death of a loved one alone.

The Anne Robson Trust is funded entirely by donations from our supporters. If you would like to find out how to make a donation, or would like more information about our work or getting involved, please visit: www.annerobsontrust.org.uk

If you or someone close to you is dying, we are here for you.

Our Helpline is confidential, free to call, and operates Monday – Friday, 12 – 6pm

Call 0808 801 0688.

* Names have been changed to protect privacy.